The Dilemma: Ethics, AIDS and the Medical Community
By Rae Lewis-Thornton
December 7, 2011
This piece originally appeared in Rae's blog, Diva Living With AIDS.
For as good of a country America is, we have some dark patches that are obvious. Slavery is high on the list; But then the disenfranchisement of the freed person in the South that followed from 1876 to 1963 made us liars. I mean it was the United States Supreme Court that declared separate but equal in 1896, after the country fought a war with slavery at the center.
So I'm not confused when Black folk come to me with conspiracy theories about AIDS. Well, some of it is ridiculous, like when they say, "There's a cure in Africa that our government is suppressing. Huh? If there was a cure in Africa, why wouldn't the African people use it there, to hell with trying save someone else, when you can save yourself. Right?? Right!!! But then there are some half truths in some of what people are saying too; Really! At the end of the day, there are real reasons to mistrust the American government and all of its departments. The Tuskegee study is case in point. Read about Tuskegee here!
Just the other day, I was taking to Bechara Choucair, the Commissioner of the Chicago Department of Public of Health about this very same topic. I shared with him that the African-American community fear is real and he and his team has to be there every step of the way reassuring us that our best interest is in their heart. But then I got tweeted a link this morning by one of my followers and she said in response, "It reminds me of the syphilis fiasco. Thoughts?" What a way to start the day right back at the Tuskegee Study!
I grabbed a cup of tea and read the article. You can see the full story here. I'm not gonna recant everything but rather explore the issue at hand. In a nutshell, during the early period of the AIDS epidemic the National Institutes of Health (NIH) enrolled children who were in foster care into AIDS drug studies.
No, not without permission, but with the foster care agencies compliance. During this period, there were very few AIDS drugs available to treat anyone! The death rate among children in the United States was high. After the death of parents foster care of AIDS children was high and they were left to figure out how to care for these children that no one wanted, not even their families in some cases.
Many of these foster agencies thought that drug studies was the best way to give children with AIDS access to some of the most advanced treatments around.
So what's the problem if these were legitimate studies? Well, there is always the overall ethic of whether children should be enrolled in toxic drug studies. All HIV medications are extremely toxic, so the larger question is, do we expose this high level of toxicity to such small bodies?
But on the other side of the coin, if we don't enroll children, then we will never know if these medications will work for them. Clearly we have learned that medications not only work differently for children and adults, but even in some cases for men and women.
Take Hydeia Broadbent for example, a baby born with AIDS and abandoned by her drug addicted mother at birth. She is still alive today because her foster mother, who eventually adopted her enrolled her in NIH studies as a toddler. She had some of the best of the best medical care and now at 27 she is still alive and living well with AIDS.
The flip side, there is always the potential that these medications will not work for that child and death is inevitable. This is however the case for adults. The overall point, I think is that young people will have to endure side effects that no little body should have to, but NO little body should have AIDS either.
This is a tough one, especially back then when there was very little treatment available. I think today I would say HELL NO! But I would have that luxury, there are a plethora of HIV medications approved for treatment. So there was no clear-cut answer back then. It really depends on how you view the right and wrong of it, if the means justify the end.
Now, there is another issue that must be addressed; And while I cannot give a yes or no if children should be enrolled, I do believe the rights of children should be protected and this is where the study in my opinion went wrong.
Many states understand that children are powerless and for this reason they put in place a way to protect the rights of children in drug studies. So if the rule is, "To appoint independent advocates for any foster children enrolled in a narrow class of studies that involved greater than minimal risk and lacked the promise of direct benefit,"; And some agencies require the protection regardless of benefits of the study.
If this is the case, why then was this portion of the study violated? Why is it when there is a chance to be above the board, we take the short cut? This is the very thing that makes what could have been a good thing a bad thing and clouds the entire project.
Another question that must be asked, why didn't the foster agencies insist that NIH meet its obligations in the study? The study shows, "Illinois believe that none of the 200 foster children-AIDS studies got the independent advocates." New York could only identify 142 of the 465 children enrolled.
There will always be the debate of whether children should be enrolled in studies. Some states have drawn the line, Wisconsin for example states, "Absolutely never allowed, nor would we even consider, any clinical experiments with the children in out foster care system. "While other states believe it was the best route at the time to help the children.
But for the life of me, I cannot see why two of the wealthiest hospitals in the country treating children, Chicago's Children's Memorial Hospital and Johns Hopkins University in Baltimore didn't comply with the rule. Furthermore, these studies are funded by the government. Money is typically distributed nationally to the local medical facilities to conduct the study with oversight from NIH. It seems to me that everyone dropped the ball. It's the dropping of the ball that helps to create distrust for the medical community and the government.
In the Tuskegee Study they just flat out lied about what the men were actually doing; And when a treatment became available, it was deliberately withheld. My questions are simple, "How do people, who take an oath to do no harm, deliberately do harm and how does our government condone it?" Those are ugly questions that no answer will satisfy.
So when we are faced with a headline that says, "Government Tested AIDS Drugs on Foster Kids," and foster care kids are majority black, and in the backdrop of Tuskegee, there is already a belief that AIDS was created to somehow kill people of color, it reconfirms in the minds of black people what they thought they knew in the beginning, that our health is not valued like white people and that creates a barrier to getting proper medical treatment early, not just with AIDS, but a whole host of medical conditions.
Yes, some of the lack of care is our privileged medical system, property and lack of resources but at the core is a mistrust of the medical community and the government. If the government and medical community really want to change this perception, then they must stop cutting corners and follow the freaking rule! There is a saying, liars lie, so if you lie about one thing, how do I know you're not lying about another. How can I trust what you are say to me about my body is true?
Black people have always believed that we have to work twice as hard to prove ourselves no matter where we go. Well, it's time for the medical community and our government institutions to do the very same thing to win our trust. When they do less than their best, they cast shadow over the good that is done and makes it a tad harder to trust the next time around. Do Better!!!
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Rae Lewis-Thornton Speaks
Rae Lewis-Thornton is an Emmy Award-winning AIDS activist who rose to national acclaim when she told her story of living with AIDS in a cover story for Essence Magazine. She has lived with HIV for 27 years and AIDS for 19. Rae travels the country speaking and challenging stereotypes and myths about HIV/AIDS. She has a Master of Divinity degree and is currently working on her Ph.D. in Church History. Rae has been featured on Nightline, Dateline NBC, BET and The Oprah Winfrey Show, as well as in countless magazines and newspapers, including Emerge, Glamour, O, the Oprah Winfrey Magazine, Jet, Ebony, the Washington Post and the Chicago Tribune, to name a few. She earned the coveted Emmy Award for a first-person series on living With AIDS for Chicago's CBS News.
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